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just diagnosed

hunter49
Posts: 204
Joined: Oct 2011

I am 49 and was just diagnosed with PC yesterday. I had a PSA of 4.1 and that was up from 2.54 from 2 and half years ago. Biopsy had part of 1 sample posative and there were 15 done (all other clean). He said he is very optomistic it was caught early. I am in the NYC area and have to now meet with doctor on options. I am in very good health and physical condition otherwise.. I forgot to ask about my Gleason score when I got the news. Any advice is greatly appreciated.

mattmans5
Posts: 70
Joined: Jan 2011

Hi ,

Im glad you found this sight , I was 47 when diagnosed with a higher p.s.a score .

There will be people posting that will be of great help , please use this sight for any questions , I have and am still check in often , it is a great help.

Good luck with your search , Jan , 2010 was when I asked a similiar question ,

wish you the best

joe , I live in new york

hunter49
Posts: 204
Joined: Oct 2011

thanks for responding. what did you end up doing?

PawPaw J
Posts: 34
Joined: Jul 2011

Hunter, Welcome aboard. Sorry to see you had to join but this is a great site to get info from. You will get lots of info from guys(and gals) that have a lot of knowledge. I can only tell you what I have experienced and basic knowledge. First off, you may want to go ahead and give more details of your biopsy, especially gleason. Folks will want to know that before giving strong advise. You may get sugestions from watchful waiting to open surgery. I am 54 y/o. I was dx June 28th, 1 core of 12 positive with that core 5% involved. Gleason 3+3. No involvement of anything else. Personally, I am in the mindset to get the beast out, period. I feel even though other treatment options may very well kill all of the cancer, the prostate is still there and a new cancer can start growing that may be more aggressive. If the prostate is out and they do truly get all of the cancer out the first time there will not be a prostate in there to grow any more cancers,and that can not be debated. I had open RP on Aug 9th and have had no incontinence at all. ED is there but there are times usable erections are achievable. Its kinda teasing us. I am only 8 weeks post op so I am optimistic on that recovery as well. Most guys go to well known surgeons, but I opted to stay local since there was one that had been doing open surgeries for over 25 or so years. My post op biopsy showed no invasion anywhere execept perineural but I think that is found in most cases. Total tumor involvement was less than 2%. Gleason still 3+3. My first 6 week PSA was less than 0.03 so I am totally happy at this point with everything. Just do what you feel is right for you after carefull consideration of treatments. I know I am one of the fortunate few to have minimal side effects after having the surgery. Good luck and keep us posted on your decisions and progress.

Johnny

hunter49
Posts: 204
Joined: Oct 2011

will do. my consult is tomorrow. one of my friends is head of prostate cancer research at Hopkins and worked on Michael Milken. He is a fan of the open RP feels you can feel around for nerve bundle better. Thanks. I have one goal and that is to see my kids grow up . they are 8 and 10 and I will do whatever it takes and smile while I do it. Can't change it so roll with the punches. Just a temporary set back

PawPaw J
Posts: 34
Joined: Jul 2011

My thoughts are pretty much the same. Many guys will not have surgery now because of the risk of side effects but my main goal was to cure the cancer. Granted there are many options now but for me I felt this was my best shot. I was for sure leary of what my quality of life would be like but that fear was not enough to not have the surgery. I wanted the surgeon to be up close and personal and just didn't feel comfortable having him 10 ft away from me so I chose open over robotic. I know that may not seem logical but to each his own. In the end we will all live with our decisions. I notice the choice of robotic surgery was also made because of the shorter recovery time but the open surgery itself and its recovery was no big deal. Six weeks post op I was back to mowing 3 lawns a day and doing pretty much what I wanted to do. I have a 5 m/o grandson and my decision also included the fact I wanted the best option I thought I could choose for LONG term cure to see him grow up. I felt as young as I am just get that prostate out. This sugery has been around longer than anything else so I just chose a surgeon that had the most experience. I'm not trying to persuade you to do this, just giving you one side of the coin. As you have probably have read on this site some are totally against surgery and some are taking the watch and wait course, and the many other treatment options and you probably will get many opinions, and it's my thoughts that we should always be supportive of everyones personal decision on this site because for whatever reason that was the best for them. Again,good luck and keep us posted.

Johnny

hopeful and opt...
Posts: 1332
Joined: Apr 2009

First, get a copy of all your medical records, so that you can talk based on facts, and have them available as you go from doc to doc.

Second, determine the amount of involvement of the core that is positive, and the gleason.

Third, and this is very, very important, have your slides sent to another independent expert pathologist. There are about a dozen in the country that are experts; Boswick and Johns Hopkins being two of them. This is important so that you will will not be over or under treated.

Fourth, Find out about face to face support groups in your area; some are fact based and others emotional.

Fifth, Take a deep breath, don't panic...you are probably in no rush to make a decision

Sixth, Read, read, read, read and research

Seven, Please repost when you get your preliminary information about the gleason and involvement of your cancer in the core that is positive.

We are here for you

hunter49
Posts: 204
Joined: Oct 2011

Thank you . I am having dinner wirh an old friend here up fro Hopkins. He is in the urological oncology research. He is a PHD and MD. Working on vaccines and immunology solutions tho this disease. I will keep you updtaed thanks again.

hunter49
Posts: 204
Joined: Oct 2011

Thank you . I am having dinner wirh an old friend here up fro Hopkins. He is in the urological oncology research. He is a PHD and MD. Working on vaccines and immunology solutions tho this disease. I will keep you updtaed thanks again.

VascodaGama's picture
VascodaGama
Posts: 1565
Joined: Nov 2010

Hunter

It might be late my comment by I would suggest you to take a list of questions to your next meeting. Your shared info on your case with low PSA and 1 positive out of 15 cores will set you on the low risk group if your Gleason score got grades lower than 3.

Today it will be a good opportunity of you to inquire about Active Surveillance (AS). 15 years of results on this modality was presented in the last PCRI conference (Sep 9-11, 2011, Los Angeles), by Dr. Laurence Klotz from the University of Toronto, which program has been running since 1995. It revealed a ZERO percentage of death cases in 15 years in patients with Gleason score lower than 6. Surely other characteristics are in play.

AS involves a set of “vigilant” norms (tests, biopsies, image studies, etc.) to control any advancement of the cancer, therefore postponing a treatment until it is to be found threatening. The only element you posted in your case is a PSADT of over 30 months which usually regards to low risk aggressivity. You could ask your doctor for a PSA density to check for indolence. This type of indolent PCa may never be a threat to a guy’s wellbeing or survival

Here is a post with a list of questions you can adapt to your situation;
http://csn.cancer.org/node/224280

Wishing you the best.
VGama

hopeful and opt...
Posts: 1332
Joined: Apr 2009

"You could ask your doctor for a PSA density to check for indolence."

Excuse my ignorance, but exactly what is the PSA density. Is it psa/prostate size?

Is a copy of Dr. Klotz presentation available on the net?

VascodaGama's picture
VascodaGama
Posts: 1565
Joined: Nov 2010

Ira

Haloa! Good evening (?), morning for me.

As you say, dPSA is psa/prostate size (volume). This is measured with TRUS at biopsy procedure or later with a color Doppler which seems to be more precise. Prostate size is checked to ascertain for BPH. Some experienced doctors can tell an approximate size by the touch during DRE (one finger equals to 0.1cm3).

In the Johns Hopkins Bulletin you read like this;
“PSA density is used to help differentiate between cancer and BPH in men with moderately high PSA levels (4 to 10 ng/mL) and normal DRE results. Cancer causes a greater elevation in PSA per prostate volume than BPH -- which means PSA density should be higher in men with cancer. To find PSA density, doctors divide the PSA results by prostate volume (as estimated by transrectal ultrasound). This method is imperfect, but studies showing that PSA density levels over 0.15 indicate a high risk of cancer have led doctors to use PSA density tests for men with PSA levels between 4 and 10 ng/mL”.

The threshold of 0.15 maybe the highest because in my researches I read that doctors recommend a dPSA<= 0.10 to identify an indolent type for aggressivity.

PCRI has not produced yet copies of the conference’s DVD. You may check at their site and order one copy as soon as it is available. Dr. Klotz speech was very positive and the slides projected indicated excellent outcomes. I wonder if Mrs PJD got some info on the matter.

Regards
VGama

mrspjd
Posts: 693
Joined: Apr 2010

Vasco,

Last month, PJD and I attended the annual 3-day PCRI conference on PCa. Great conference again this year. From your post, I take it you were there? If so, sorry we missed you!

To answer your question, I checked with PCRI and the DVD should be available sometime around mid to late November. Keep checking their website around that time. If I understand correctly, in addition to the distinguished keynote speakers, the smaller Q & A break-out sessions (with the speakers) were also recorded and should be included on the DVD set as well. Hope this answers your question.

All the best,

mrs pjd

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

You have allready received excellent input from other members. I'll just add my greeting and sorry that you had to find this corner of the www. However it is an excellent spot to find with support from many.

You mentioned you wanted to be around for your two sons. With and early grade cancer you will be around for many years! My dad just celebrated 15 year post treatment for his prostate cancer (Early grade). I just passed my two year mark and have my PSA drawn next week.

Lewvino
Age 57

hunter49
Posts: 204
Joined: Oct 2011

thank you

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